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P12. Preventing carer burnout

Detailed programme, abstracts and presentations

P12.1. Alzheimer holiday in Austria

Auer Stefanie, Span Edith, Zehetner Felicitas

Introduction: Prolonged caregiving is an exhausting task and can result in the development of depression and other serious health problems. Phases for recovery are a necessity and not a luxury. However, accepting respite is a learning process for many caregivers. Traditional respite programs require a separation between caregiver and PwD and may therefore not support this learning process because of the caregiver’s worries about the PwD. We developed a respite program, the “Alzheimer holiday” in which both, the caregiver and the PwD can enjoy their break from daily routine. Effects of this program were assessed.

Methods: This two week program is provided in a holiday region of Upper Austria, in Bad Ischl. In order to promote a close to life setting, persons live in a hotel and all program activities are provided there as well. While the PwD receives stage specific stimulation and supportive training twice a day (morning and afternoon), caregivers receive information about the disease, are trained in special communication techniques and receive group and individual counseling. Social activities and trips to nearby attractions and taking daily walks are additional program points. The effect of the program on PwD’s functioning, cognition and behaviour as well as on caregiver burden and depressive symptoms were assessed in a single group pre-post design.

Results: 104 patient-caregiver dyads (GDS levels 4-6) took part in the study. PwD’s cognition, as measured by the MMSE, concentration, as measured by the Brief cognitive Rating Scale (BCRS) behavioural problems as measured by the BEHAVE-AD-FW and the E-BEHAVE-AD decreased significantly after the intervention. Caregiver Burden and depressive symptoms decreased significantly as well. No significant improvements were found for patient’s functional abilities measured with the Functional Assessment Staging (FAST).

Conclusion: The short intervention showed significant improvements in cognition and behaviour of the PwD and release caregiver burden and depressive symptoms. The program is on-going and very well received by PwD and caregivers alike. It is cost covering and non-profit oriented. Different national insurance companies provide financial support for caregivers. Since 2000, 355 PwD and Caregiver dyads have participated in this program.

P12.2. Evaluation of a group psychotherapeutic intervention for caregivers of people with Alzheimer’s disease

Poudevida Sandra, Molinuevo José Luis, Gispert Juan Domingo, Camí Jordi

Background: Family and caregivers of people with Alzheimer’s Disease (AD) devote substantial time, effort and economical resources to their care, even putting at risk their own psychological and physical health. Interventions combining education about the disease and psychological treatment have been shown to improve several emotional dimensions and perceived burden. Besides, this type of intervention also helps caregivers with accepting and managing a new and changing reality and facilitating the communication among their peers.

Objective: To evaluate the clinical impact of a group psychotherapeutic intervention on the mood state and perceived burden of primary caregivers of people with AD.

Design and methodology: The trial was carried out in three centres in the Barcelona area. Ninety primary and informal caregivers (30 participants per centre) were randomised into two groups: 60 participants in the Control Group (CG) and 30 participants in the Intervention Group (IG). Participants of the IG (ten per group) had a total of 14 weekly group psychotherapy sessions of 90 minutes each. Psychotherapy was based on cognitive behavioural therapy, with some educational components. Participants also learned and practiced the Jacobson relaxation technique.

Both groups were evaluated before and after the intervention. Theprimary outcome measurement was the differential change from baseline to final evaluation between IG and CG in mood state measured by the Profile of Mood States (POMS). Secondary evaluated outcomes were change in caregiver burden (Zarit Scale), quality of life (SF-36 Health Survey), anxiety and depression (HAD scale), perceived social support (Duke-UNC questionnaire) and coping variables (COPE-28).

Results: Results show a statistically significant improvement in mood state and caregiver burden. Moreover, a tendency towards improvement in the scales of quality of life, depression and perceived social support was observed. On the other hand, there was no significant improvement in the anxiety and coping scales.

Conclusions: The results show that group psychotherapeutic intervention for caregivers of people with AD leads to an improvement of their mood state and perception of burden, thus showing promise in improving the emotional status of caregivers. However, additional trials with larger cohorts at different geographical locations are required to confirm these results. For this reason, we are currently starting a large-scale trial implementing a psychotherapeutic group intervention in 25 centres throughout Spain.

Trial - NCT01762618.

Acknowledgements: This study was funded by “Obra Social La Caixa”. The authors thank the participant centres: Centre Sociosanitari El Carme (Badalona Serveis Assistencials), CAP Les Corts (Barcelona) and CAP Sarrià (Barcelona).

P12.3. The Aloïs Network

Duval Philippe

The Aloïs label has been created to develop a network of shops, societies, NGO in different economic sectors able to propose adapted solutions for people.with Alzheimer disease and their caregivers.

The origin of the project comes from an observation: when a family includes a parent with Alzheimer disease at home, the situation becomes very quickly a syndrome of loneliness: stopping of social activities, breaking of the family and relational circle, etc. This situation has been well understood and included in the aims of the French politic in direction of the Alzheimer disease, especially for the informal caregivers.

Among the effects of the breaking of the social link, we can see that the families loose the habit to go to the restaurant, to go to the hairdresser, to go shopping. Among the reasons, we can mention the shame to show the behaviour of the person with Alzheimer disease to people who are not able to understand what happens and who do not know how react.  We can also speak of  the stress of the person with Alzheimer disease  in such situations. The objective of the Aloïs Network is to attribute to shops, NGOs and other partners, a specific Label according to different criteria defined by a social and professional comity. These criteria include especially a specific training of a part of the employees of the structures participating to the network.

The training developed for the employees lasts three days. It is shared between theoretical and practical periods. It has been studied through a European experimentation simultaneously in France and in Spain in the frame of the PROGRESS program. This experimentation has also shown important possibilities to create jobs in the structures included in the Aloïs network. The project has begun in the PACA region, in the south of France. The results will be evaluated in December 2014. Several partners are associated in the project: chamber of commerce, Alzheimer NGO, local authorities, etc.

P12.4. Promoting behaviour and coping in family carers of people with dementia

Htay U Hla

Caring for a person with dementia has been associated with high levels of depression and other psychological symptoms. Previous research suggests that care giving responsibilities can directly affect carers’ health behaviour. The present study examined the relationship between coping with caring and lifestyle behaviours in carers of people with dementia.

Previous research indicates that health behaviour in family carers of people with dementia (PwD) is a significant caregiver outcome. Despite the growth of knowledge in understanding health behaviour in general care giving, we know very little about the most important predictors of health behaviour in carers of PwD. In addition, there are no studies conducted so far that have directly related health behaviour and coping with care giving, neither have they investigated the influence of depression and anxiety, and their potential influence in predicting whether a caregiver will adopt a healthy lifestyle. The present study was a cross-sectional survey investigating the relationship between health promoting behaviours, carer burden, coping ability in carers and self-reported levels of anxiety and depression.

The main objectives of the present study were: a) to identify associations between coping with care giving and preventative health behaviours, b) to investigate whether self-efficacy and engaging in health behaviours is associated with caregiver burden, and c) to examine the contribution of depression and anxiety in predicting health behaviour in family carers.

In line with previous theoretical models it was hypothesised that higher levels of health-promoting behaviours will be associated with higher levels of coping ability and lower levels of caregiver burden. In addition, family carers scoring high in self-efficacy were expected to report higher levels of coping and more likely to report practising health-promoting behaviours. It was hypothesised that mood variables such as depression and anxiety will influence overall health practices in family carers of PwD.

P12.5. Caring for residents with dementia: Interplay between emotion, emotion regulation, and well-being in professional caregivers

Bassal Catherine, Dan-Glauser Elise, Kaiser Susanne

Caring for elderly with dementia in residential settings is a very complex task, not only embracing technological skills, but also efficient communication and emotional competencies. In order to cope with high dependency, absence of reliable communication, and lack of interactional feedback, professional caregivers need to adjust their attitudes and emotions to maintain the caring relationship with the resident. Consequently, all these conditions require a high emotional involvement, which, in other contexts, has been frequently associated with burnout and stress. So far, however, little research has been carried on to better understand the emotions, emotion regulation strategies, and well-being of professional dementia caregivers, as well as their interplay.

First, the current study aimed at observing the type and describing the frequency of emotions experienced at work by professional dementia caregivers. Second, the study proposed to analyse the links between emotion profiles, emotion regulation strategies, and well-being. Additionally, and given the consistent link between emotion regulation and experienced emotions on the one hand and emotion regulation and well-being on the other hand, the study aimed third, at testing whether emotion regulation moderates the relationship between experienced emotions at work and well-being.

To fulfill these goals, we conducted a descriptive study ona convenience sample of 43 professional dementia caregivers. All participants completed standardised questionnaires on emotion regulation, physical and mental health and burnout. In addition, a non-standardised questionnaire investigating 23 emotions caregivers could experience at work was used.

Results of this research showed first, that in the challenging context of professionally caring for people with dementia, caregivers experienced more frequently positive emotion, such as joy and pride, than negative emotions, such as anger and sadness. Second, when they used relatively inappropriate coping styles, they were more likely to experience negative emotions and less likely to experience positive emotions. Additionally, these strategies were linked to poorer physical and mental health. Third, expressive suppression significantly moderates the relationship between experienced emotions and emotional exhaustion; the latter result suggests that in some circumstances, expressive suppression might be a protective factor against emotional exhaustion

The current study is a promising attempt to evaluate the complex interplay between emotion, emotion regulation, and well-being in professional caregivers. This work surely opens the path to future research, which could more deeply focus on the emotional landscape and on the specific effects of various emotion regulation strategies used by dementia caregivers at work, while considering their increase in well-being as the most important target to improve.

P12.6. Dementia Care Networks in Germany: The DEMNET-D-Study

Wolf-Ostermann Karin, Gräske Johannes, Hoffmann Wolfgang, Holle Bernhard, Schaefer-Walkmann Susanne, Thyrian René

Background: Worldwide the number of people with dementia (PwD) is growing. Therefore great efforts are directed to support PwD and their relatives in their own living arrangements. In Germany, local associations of different stakeholders (community care services, medical doctors, therapists, hospital facilities, self-help organisations, local authorities, etc.)  are engaged in providing multiprofessional care and support for PwD in the community. However, these dementia care networks (DCN) are not implemented systematically or nationwide. Existing DCN differ regionally and are very heterogeneous. Empirical findings of helpful structures and effectiveness of DCN are lacking yet.

Objectives: In our study, we survey characteristics and structures of 13 DCN all over Germany in order to raise knowledge about useful structures of DCN and to prove effectiveness in terms of organising better support for PwD and their relatives.

Methods: We consider DCN structures and processes as well as health related outcomes of PwD and their relatives. Structures and processes in DCN are evaluated by structured interviews. Health-related outcomes e.g. quality of life, depression, social participation, use and costs of health care supply and burden of care are surveyed in a a longitudinal design (2012-2015) with up to n=715 PwD and family caregivers

Results: The participating DCN are located all over Germany geographically covering more than 5 million residents in urban as well as rural areas. First results of the structured interviews show the heterogeneity of the DCN as well as the meaning of governance in such network structures. Preliminary results of the baseline survey on outcomes of PwD and family caregivers will be presented at the conference.

Conclusion: Our results will shed some light on the question which structural aspects describe successful DCN in order to improve care and social participation of PwD and reduce burden of caregivers.



Last Updated: Thursday 31 October 2013


  • Acknowledgements

    The 23rd Alzheimer Europe Conference in St. Julian's, Malta received funding from the European Union, in the framework of the Health Programme. Alzheimer Europe and the Malta Dementia Society gratefully acknowledge the additional support provided by foundations and companies.
  • European Union